NDIA Accountability Project

Submission to the NSW Inquiry into Supported Decision-Making and the Role of the NSW Ageing and Disability Commission

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Submission
No 37

SUPPORTED DECISION-MAKING IN NSW

Organisation: Down Syndrome NSW
Date Received: 25 March 2026

Submission to the NSW Inquiry into
Supported Decision-Making
and the Role of the NSW Ageing and Disability Commission

March 2026

DOWN SYNDROME
NEW SOUTH WALES

About Down Syndrome NSW

The Down Syndrome Association of NSW was established in 1980 by parents of young people with Down syndrome. As the children of the founding members grew to adolescence and adulthood, so too our services extended to all life stages. We now provide information and support, advocacy, capacity building workshops, training in schools, community participation programs, pre-natal expert advice, new parent resources and support and specialist employment preparation and connection.

We are an enthusiastic team of professionals with expertise in our relevant fields of service provision, support and advocacy. Some of us have lived experience with a family member with Down syndrome, some bring a range of expertise and industry experience. We are here to support you — all working together to help our members with Down syndrome achieve their full potential.

02 9841 4444 & admin@downsyndromensw.org.au www.downsyndromensw.org.au 2

Table of Contents

1. Introduction

This submission is informed by interviews with people with Down syndrome, parents, siblings and experienced advocates. It reflects decades of lived experience, practical insight, and a deep understanding of how systems work, and fail, on the ground.

The findings are clear. Supported Decision-Making (SDM) is not yet embedded as standard practice across systems. There are strong examples of SDM working well, but they depend almost entirely on committed people and individual relationships, as well as trust and advocacy, rather than systemic design.

People with Down syndrome consistently expressed a desire to be involved in decisions about their lives. However, they continue to encounter systemic, attitudinal and structural barriers that limit their autonomy.

Without reform, SDM will remain only hopeful rather than operational.

While this submission specifically represents and references people with Down syndrome, DSNSW recognises that the findings and recommendations can apply to and benefit other people with intellectual and cognitive disability.

Our submission has been structured to respond to the Terms of Reference of the Inquiry.

2. Understanding Supported Decision Making

A striking finding was that many interviewees did not initially recognise the term “Supported Decision-Making”, yet when asked, they could describe it accurately in practice.

This highlights a critical issue: SDM is not well understood as a formal framework, but it is intuitively understood and valued when experienced.

At its core, SDM is:

  • Being asked first
  • Being listened to
  • Being supported - not directed
  • Being able to make decisions, including mistakes

As one advocate observed:

“The result of good supported decision-making is that the person owns the decision.”

3. What Works: Evidence of Good Practice

Effective SDM is already happening, but it is fragile and inconsistent. At its best, SDM is already transforming lives.

Relational Support

People with Down syndrome described making meaningful decisions when they are:

  • Supported by trusted people who know them well
  • Given enough time, accessible information they can understand, and real choices
  • Respected as the decision-maker, including the right to make mistakes

DSNSW members shared the following examples where people with Down syndrome used supported decision-making effectively in their lives to:

  • Establish and operate a small business with family support
  • Engage a “Circle of Support” to test decisions, weigh options and assert boundaries
  • Make choices about employment pathways, daily routines, and social participation
  • Make big decisions about housing, relationships and community life

One active advocate with Down syndrome described using a Circle of Support:

“Everything I do, I check with my circle… they help me think, and then I decide.”

Real Autonomy

People with Down syndrome and their supporters told us they valued:

  • Making their own choices about all aspects of their life including work, housing and daily life
  • Being free to make mistakes and learn from them
  • Having supporters who will listen and who step back when appropriate

“It’s important I’m in charge, even if I make mistakes.”

Practical Supports

People with Down syndrome value effective SDM strategies including:

  • Plain language and visual tools
  • Time to consider decisions
  • Access to trusted people with long term involvement and deep understanding of the person and their history, needs and preferences.

“Quick decisions are more dangerous than when I take time to make a decision.”

4. What Doesn’t Work: Systemic Failures

Across all interviews, there were consistent examples of SDM being either ignored or undermined.

Assumptions of Incapacity

People with Down syndrome are frequently excluded from decisions, spoken about rather than spoken to, and judged as incapable without assessment.

“People talk to Mum instead of me.”

Service-Driven Decision-Making

Decisions by services are often shaped by provider convenience, risk aversion, and perceived compliance requirements rather than, more importantly, the person’s will and preferences.

Failure to Provide Accessible Information

Without accessible information there is no real choice. Agreement is often compliance or an eagerness to please, but not informed and freely-given consent.

“Some people [with Down syndrome] just say what they think you want to hear.”

Harmful Outcomes

The failures of SDM as described above can lead to loss of the person’s independence, their social isolation, misdiagnosis and poor health outcomes, and ultimately, reduced quality of life.

Members gave us examples:

  • A person with Down syndrome was encouraged toward unrealistic goals (e.g. driving) without proper safeguards and research into the person’s actual capability and capacity.
  • A provider pressured an individual with Down syndrome to agree to appear in promotional resources, without first seeking informed consent.
  • Health decisions were rushed or determined without proper explanation
  • Misdiagnosis of dementia leading to unnecessary and continued restriction of life opportunities. This was the result of assumptions about the person with Down syndrome by their doctor based solely on their age. The dementia diagnosis was challenged by a concerned support worker and overturned after proper clinical and diagnostic tests were completed. The person then began to enjoy a life with more choices and activities.
  • Restrictive practices such as preventing independent mobility or participation based on staff convenience
  • Where there was no individual decision-making for the people with disability in a group home.

The result is not just poor decision-making, it is loss of autonomy, loss of dignity and loss of quality of life.

5. Barriers to Supported Decision-Making

Attitudinal Barriers

The attitudes of others can significantly impact people with Down syndrome on a daily basis.

Negative Attitudes that negatively affect people include: fear of risk; persistent low expectations or as former Disability Discrimination Commissioner Graeme Innes described it “the soft bigotry of low expectations”; prejudice, ignorance and preconceived assumptions about incapacity; and the failure to recognise that all decisions matter to the person.

Many small or seemingly insignificant decisions can add up to a significant impact on the person with Down syndrome.

Systemic Barriers

  • Lack of recognition of SDM as a legal and operational requirement
  • Fragmented systems with confusing pathways and poor coordination
  • Over-reliance on substitute decision-making as default
  • Inadequate availability of independent advocacy

Communication Barriers

Communication is essential to effective SDM. Barriers to good communication include:

  • Lack of plain English, visual supports and accessible formats to assist the person understand the decision
  • Time-poor professionals
  • Professionals speaking only to family members or staff instead of directly to the person with Down syndrome.
  • Failure to check understanding: The recognition that people with Down syndrome could be agreeing to decisions simply to please others.
  • Lack of skills and education among professionals in communicating effectively with people with Down syndrome
  • Failure to adapt or adjust communication where there is a lack of understanding, including continuing to use methods that are not accessible to the person

Structural Barriers

Inflexible service models, especially in:

  • Employment; within segregated settings such as sheltered workshops.
  • Housing; where there is no personal choice or autonomy for the person within a group setting.
  • Health: where consultations are rushed, and do not involve consulting with or talking to the person with Down syndrome. And also where treatment options are

unnecessarily limited, and decisions made without prior discussion with the person and/or their family/supporter.

Lack of trained workforce in SDM practices

Relationship Barriers

  • There is a lack of intentional network-building including the absence of strong personal networks. Some people with Down syndrome do not have strong personal networks, and cannot develop supportive personal networks without assistance and support.
  • Isolation is a real danger, particularly for people as they grow older or for people living in regimented group settings
  • Similarly, loneliness was mentioned often in relation to people in individualised living arrangements.
  • Over-reliance on ageing parents without succession planning

6. Key System Areas of Concern

In the legal system, there is:

  • Limited access to lawyers skilled in SDM and disability rights
  • Lack of accessible legal information (e.g. wills, rights, voting)
  • Power of Attorney is often used without meaningful engagement from the person with Down syndrome
  • Need for mandated evidence that SDM has occurred in legal processes

Consequently, there is an urgent need to:

  • Embed SDM in legal practices and processes
  • Require evidence that SDM has occurred
  • Ensure accessible legal information

“Lawyers should help me speak up - not speak for me.”

“People [with Down syndrome] should be registered to vote.”

Financial Decision-Making

In the interviews about financial matters, people told us that there is

  • Heavy reliance on family members. In some cases this can restrict the level of financial capability to the knowledge of the family member.
  • Limited supports for financial literacy for people with Down syndrome
  • Banking systems that do not cater to people with Down syndrome, that do not accommodate their needs, and that are not accessible
  • Risk of exploitation or undue influence
  • Strong need for “safe to fail” learning environments where people with Down syndrome can make decisions that may not be perfect.

One story involved a person with Down syndrome who was asked by a “friend” for money. The person offered a small denomination note. The “friend” wanted a large note so the person handed it over.

At the same time:

“People need to be able to fail safely.”

“Banks need to do financial education for people with intellectual disability.”

Health

Interviewees reported:

  • Failure to involve the person in decisions that affect their health
  • Preconceived assumptions about quality of life and treatment options due to Down syndrome rather than the specific needs of the particular person
  • Inadequate communication by clinicians and other health professionals due to generalised judgements about Down syndrome, or a lack of willingness to communicate directly
  • Critical need for trusted supporters in health interactions

A particularly concerning theme was misdiagnosis and/or dismissal of symptoms, leading to serious harm

“Health should not write people [with Down syndrome] off.”

“Despite being able to walk, an Occupational Therapist in a group home decided it was ‘easier’ if the person with Down syndrome did not walk anymore and only used a wheelchair from then on. The parents would visit and take the person on actual walks without the wheelchair. When away from the parents, the person’s time in the wheelchair has since created significant co-morbidities and several critical movement issues.”

Education

Barriers include:

  • Continued segregation in educational settings limits decision-making capability
  • Lack of accessible information about available courses
  • Insufficient support for lifelong learning
  • Risk of the “illusion of inclusion” without real participation; where the person with Down syndrome has joined a class/group/activity but not included or involved in the activities and so becomes personally isolated.

Employment

In the area of employment people talked about these barriers:

  • Low expectations and limited mainstream opportunities
  • Poor communication in workplaces, particularly about job requirements and standards
  • Lack of support to explore employment options, build careers and/or establish businesses.
  • Continued reliance on segregated employment models as a default

“A service provider asked me to do some work with them. They only paid me with a gift voucher. I wanted them to pay my business. I felt ripped off. My circle supported me to make a report to the service provider management.”

“People with disability are ‘kept in their lane’ and not offered opportunities available to others.”

Care Systems

Participants described:

  • A significant power imbalance in the relationship between providers and the people with Down syndrome who rely on them for support that can lead to service-driven decisions rather than genuine information from the person.
  • The focus can be on the person’s deficits rather than the person’s possibilities resulting in little or no attention to the person’s decisions about their future.
  • Lack of focus on relationship-building and community inclusion causing increasing isolation
  • Decisions often shaped by organisational structure or perceived funding constraints, not focussed on preferences expressed by the individual.

“You have to fight for everything. It’s exhausting.”

7. The Critical Role of Relationships

A consistent and powerful finding is that SDM depends on relationships. This brings into focus the importance of intentional relationship-building.

Effective SDM can depend on:

  • The person with Down syndrome having access to trusted people who have had long-term involvement, deep knowledge of the person, and time to talk through issues and decisions.
  • Circles of Support are a valuable support for a person with Down syndrome. Circles of Support can be drawn from trusted people and other reliable relational arrangements to support the person with the little and big decisions they face.
  • Ongoing engagement, not one-off input or checklist
  • Community connections and participation (e.g. sport, volunteering, social groups)

Where these features of SDM exist decision-making improves, risk is better managed and isolation is reduced.

Where they do not, substitute decision-making becomes an unnecessary but regular default, people become increasingly isolated and disempowered, and quality of life is diminished.

“People need friendships, belonging and to be missed when they’re not there.”

8. The Role of the NSW Ageing and Disability Commission (ADC)

Respondents either did not know about the ADC or were confused about its role. However, there is strong support for an expanded and strengthened role for the ADC.

People with Down syndrome and their supporters told us they want the ADC to:

Be visible and accessible

The ADC must:

  • Pro-actively become widely known and understood
  • Clearly communicate its role
  • Provide simple, accessible information
  • Operate a “no wrong door” approach

Take the lead on Supported Decision-Making

The ADC should:

  • Promote SDM as standard practice
  • Establish and promote acceptable standards of SDM
  • Develop practical tools, guidance and resources that are widely available, in plain English and accessible formats
  • Provide pro-active sector-wide training

Provide oversight and accountability

  • Monitor the SDM practices of service providers
  • Require evidence of SDM in decision-making
  • Investigate where people with Down syndrome may be at risk or are unheard
  • Engage the Official Community Visitors in promoting, monitoring and reporting the use of SDM in visitable services

Support individuals directly

  • Speak directly with people with disability
  • Conduct independent interviews
  • Provide ongoing check-ins

Take a preventative role

  • Build awareness before crises occur
  • Support person-centred network-building and relationship development with the person with Down syndrome
  • Reduce isolation, particularly for older people with Down syndrome

Strengthen advocacy

  • Increase access to independent advocates
  • Support people through complex decisions and disputes

There is a clear expectation that the ADC must be more than advisory—it must have authority, accountability, and impact.

This Inquiry gives the ADC the opportunity to become the state authority on Supported Decision-making and effective SDM practices. People with disability in NSW would welcome an authority that can successfully enable the exercise of their rights within NSW service systems.

“The Commission [ADC] must not be a “toothless tiger”- it must have authority and impact.”

Substitute Decision-Making

There is consensus that substitute decision-making has a role- but only as a last resort.

It may be appropriate in situations where there is serious risk or harm, for people where capability is significantly impaired or in urgent medical decisions.

However, the person with Down syndrome must still be involved to the greatest extent possible. The person’s will and preferences must guide substitute decisions. When using a substitute decision-maker there must be demonstrated evidence of attempts at SDM.

Critically, substitute decision-making should not be the default—it should be the exception.

“Always try to include the person.”

9. Recommendations

  1. Legislate Supported Decision-Making as a required practice across legal, financial health, education, employment and care service systems
  2. Require evidence of SDM in significant decisions affecting people with disability
  3. Invest in independent advocacy as a core component of SDM and expand access
  4. Mandate accessible information (plain English, visual formats) across all systems
  5. Invest in intentional relationship-building including Circles of Support and community connections
  6. Require SDM training for professionals, service providers and make it available to families
  7. Strengthen the NSW Ageing and Disability Commission to:
    • Lead SDM reform
    • Enforce accountability
    • Provide education and prevention
    • Directly engage with individuals

In addition to recommended upgrades that amend the ADC Commissioner Act 2019, initiate reforms to other related legislation:

  • The NSW Disability Inclusion Act 2014 to include Supported Decision Making, SDM practices and capacity-building in its Objects, General principles and throughout the implementation clauses of the Act, and regularly report on outcomes.
  • The NSW Guardianship Act to include Supported Decision Making, SDM practices and capacity-building, and require evidence that all avenues of SDM have been tested before a Guardianship Order can be made.
  1. Promote a presumption of capacity and capability
  2. Enable safe risk-taking and learning which allows people to “fail safely” and learn through experience

11. Conclusion

The evidence presented in this submission is consistent, compelling and urgent.

The evidence from interviews with our members is unequivocal.

People with Down syndrome can make their own decisions - with the right support. People with Down syndrome are too often excluded from decisions that shape their lives People with Down syndrome want to make their own decisions.

Supported Decision-Making is not an optional extra. It is fundamental to Human rights, to Dignity and to Quality of life.

The challenge now is not just to define SDM - but to embed it, require it, and enforce it.

This requires a shift from protection to empowerment, from control to expectation, from systems-centred to person-centred practice.

With the right leadership - particularly from the NSW Government and the NSW Ageing and Disability Commission - this shift is both possible and can become the norm.

Down Syndrome NSW appreciates the opportunity to provide our recommendations on Supported Decision-Making for people with Down syndrome and families.

As previously explained, DSNSW recognises that our findings and recommendations can apply to and benefit other people with intellectual and cognitive disability.

We welcome any requests for more information, for clarification and for further engagement on this important issue for our members.

About Down Syndrome

Down syndrome is a genetic condition, sometimes referred to as Trisomy 21. It is the most common genetic disability. There are approximately 13,000 people in Australia with Down syndrome. The birth rate in Australia for Down syndrome is one in every 1,100 births.

Most people have 23 pairs of chromosomes, making 46 in total. People with Down syndrome have 47 chromosomes in their cells, having an extra of chromosome 21.

People with Down syndrome have:

  • Areas of strengths and other areas where they need support;
  • Some level of intellectual disability;
  • Some characteristic physical features;
  • Increased risk of some health conditions;
  • Some developmental delays and learning difficulties.

Down syndrome is a genetic condition, it is not an illness or a disease. It is nobody’s fault. There is no cure and it does not go away.

In the 1950’s (not that long ago), the life expectancy for people with Down syndrome was as low as 15 years of age. In recent times, progress in medical and social sciences has improved the quality of life enjoyed by people with Down syndrome. In Australia today, the life expectancy or Down syndrome averages 60 years of age.

Whilst this is a milestone to be celebrated, it also presents us with the first generation of people with Down syndrome who will, in the main, outlive their parents. This creates an even greater need for representative associations like Down Syndrome NSW to provide critical services, supports and advocacy at all stages across the lifespan.

With the right supports, people with Down syndrome are able to live full and active lives in their communities. From education, to employment, to community participation, to relationships and housing options, people with Down syndrome enjoy the same needs and aspirations just like everyone else. However, achieving these goals can be harder for people with Down syndrome, with some level of support needed to help them achieve the kind of life that most people take for granted.

Down Syndrome NSW proudly works with passion to support all people with Down syndrome to live inclusive, valued and active lives.

Our Important Work: Down Syndrome NSW

We provide services and supports currently to all people with Down syndrome in NSW, their families and carers across the full lifespan including:

  • Information and support;
  • Library and resources;
  • Workshops and training;
  • Parent support networks and regional hubs;
  • Prenatal and early years resources and support;
  • Inclusive education support, teacher training and behaviour management;
  • Transition to school, school years and teens support and advice;
  • Post school years transitions including travel training,
  • Community engagement and participation for children, teens and adults;
  • Accessibility support to participate in events and access infrastructure.
  • Health, sexuality and ageing advice, advocacy and support;
  • Guardianship and wills resources;
  • Self advocacy, capacity building, capability and mentoring;
  • Individual advocacy support, advice and resources;
  • Systemic advocacy, policy submissions and research.
  • Policy, lobbying and proactive government relations;
  • Community capacity building, awareness, inclusion and social capital.

We work to promote and represent the views of people with Down syndrome, their families and carers in all that we do. We are governed by a Board comprised of parents and family members, as well as a Down Syndrome Input Council comprised of people with Down syndrome. We hold monthly “Have Your Say” sessions with our adult cohort also to ascertain their views at frequent intervals and undertake robust consultation in a variety of forms to ensure all members have their views heard and represented.

We are enthused to work together with the Commonwealth, state and territory governments to support an inclusive, vibrant and diverse Australia where every person with disability is heard and valued.

Contact

Deborah Begg General Manager

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